My life with Arthur

lulubell69

Just thought I'd share with you the lows and highs of living with arthritis. The last couple of months have been extremely difficult yet exciting with so much going on.
I'm 44, married, 3 children (eldest with severe disabilities), took ill health retirement in March and I've had RA for about ten years.
Over the years I've tried all the conventional drugs for RA and my lovely rheumy now jokingly calls me his "biggest failure". Two months ago, while having infliximab infusion in hospital, I had a very severe anaphylactic reaction in which my body started to shut down, very scary. That was the end of that drug.
About this time we decided to sell our house and hopefully buy a bungalow as the stairs were proving very difficult, sometimes impossible, for me. However, we needed 4 bedrooms and four bed bungalows are scarce and very expensive. Three weeks ago, on the day we were going to benidorm for a few days, we accepted an offer on our house and had an offer accepted for a four bed bungalow. Albeit two bedrooms are loft rooms but that suits my teenagers fine. Although we need a bigger mortgage and have to sell our lovely caravan to fund the alterations I'm so excited to be living with no stairs. It's funny what things excite me these days....
My lovely rhummy started me on another drug last week, abatacept, apparently I'm the first in my area to try it, however another anaphlaxis put an end to that. Because Ive tried and tested most available drugs he now wants to return to humira which was great while it worked a few years ago.
So here I am, trying to sell my caravan, organising the buy and sale of houses, attempting to sort and pack the entire contents of my house and sometimes twice weekly trips to the hospital.
This is all on top of caring for a disabled son and living with this painful, debilitating and depressing illness. Of course all this is with the help of my lovely hubby and children. No support from other family members may I add.
However I'm feeling very upbeat and looking forward to the future - only hope all goes according to plan. Just hoping luck is on my side for a change.
Thanks for reading
Take care
Les

Mat48

Les - your courage and optimism are really inspiring - thanks for sharing your story. I wish you all the luck in the world. I too have an eldest son with a disability. He is now in his fourth year at university but he still relies a lot on us from a distance.

I have only had RA for a few years now and hope to get it well controlled again soon but have had tolerance issues with 2 DMARDS so far - one critical the other just about not being able to tolerate it for myself.

I really hope that going back to Humira makes a big difference to you and that all the house buying, selling and moving goes as smoothly as possible for you.

bubbadog

I really hope everything goes well with the sale of the house and the caravan. I know what it's like having to pack up your house when you have a debilitating illness it takes several times longer and you need a break every 15mins! You are amazing having to juggle all that and a disabled son as well as your own illness. I hope all goes well and you can have a great start to 2014 in your new home! (())

barbara12

Les that is so inspirational to read...once settled in that bungalow it will all be worth it...I just wish your family would help out, but with your hubby and children you will get there ..I will have everything crossed for a smooth change over..please let us know how it goes...xx

stickywicket

I really don't know how you're managing to do all that at once, Les, especially when you're on no 'real' meds for your arthritis. Moving house is very stressful and the work involved plays havoc with the joints. I hope you can get some help with the packing.

You've had some dreadful experiences with the anti-tnfs. I'd find anaphylactic shock very scary and I think I'd have to really steel myself to try another. I hope very much that going back to the tried and tested humira works well for you.

dibdab

Wow Les, you are truly an inspiration. I really hope that the move goes smoothly, and that the rheumy manages to find something to control your symptoms. You are facing life with great courage and determination. thank you so much for sharing it with us.

Deb xx

Boomer13

Yes, thank you for sharing your story. You are truly courageous and very inspiring. I wish you all the best.

Anna

Ah, think of how wonderful to be in a house without many stairs. I can only dream......

dreamdaisy

You are very nearly me (or I am very nearly you, one of the two). In the past four months or so my husband and me have sold both our late mums' houses, bought a new one for us (a chalet-bungalow type, a converted Victorian coach-house) and today the boxes were delivered for me to start packing for our move. It's amazing what we can do when we need.

I wish you very well because you have considerably more stresses and strains than me. I agree that the arthritis doesn't help but I am sure we will both get through this trying time because a better life awaits, yes? Good luck! DD